Complications

Complications

Medicine Complications May 12, 2009, 7:45 AM

First, I have to express a special thanks to each of you who sent messages of encouragement following my first “posting.” I never imagined how much such words of hope would lift my spirits and generate such fond memories. Thank you for the gift of your words!

This is an update I should have posted earlier last week as things began to transpire/fall apart. My wise mother reminded me that support, encouragement, and prayers were integral reasons for having the CarePage to begin with. After some thought, I realized the root of my procrastination. I have waited to post this update because I didn’t want my first update to be one of crisis but rather of good news. My heart’s desire was to encourage you! I am new to CarePages as well and I must admit it is a strange feeling to have a website about myself. My greatest fear is that it is viewed as a “woe is me” site instead of an avenue for us to keep others more efficiently up to date on the good and the challenging medical/life issues we find ourselves facing. We had several hopes in the creation of the CarePage site including facilitating better communication with family and friends (especially considering our move from TN to WA), easing the burden on our families as they try to update others on the latest medical news, allowing Steve and me more freedom to talk about other topics with friends other than my health, and most importantly for us, to journal how we see the hand of God at work in ALL things. We desire for you to join us in prayer as we petition our Heavenly Father for wisdom, discernment, and patience as He uses these challenges for His glory – and as always, we ask you to partner with us in prayer for ultimate healing.

Now, where to begin? Several intertwined, complicated issues have transpired and without some resolution, I could be facing very serious problems.

I will start with pain control. Just to clarify – I had excruciating headaches at the base of my skull prior to my brain surgeries in 2000. Those were successfully alleviated with my brainstem decompression surgery and the postoperative complications were finally resolved in Spring of 2002. The headaches, often debilitating, that I experience now began in June 2003. We were driving home from our first illness-free vacation in our married life when we were in a high-speed collision (interstate speed) caused by a negligent driver. I sustained a closed-head injury (traumatic brain injury), which required 1 1⁄2 years of cognitive rehabilitation and the challenge began to find a medicine to adequately alleviate my continual headaches. My tolerances with pain medicines still existed following 14 years of my previous headaches so we were left going back to a very strong pain medicine that brings me pain management results without too much effect on slowing my GI tract. I have been on that medicine formulation for 6 years, and with some tweaking here and there, have been able to manage my pain. I am never without pain but it is tolerable much of the time thanks to this medicine. In the last few weeks, the health insurance company has decided that this medicine is being used “off-label” from how it was approved by the FDA. Many medicines are used “off-label” when it benefits the insurance company (i.e. Lower costs) but not preferred by companies when it is an expensive medicine. The pharmaceutical trials for the medicine were done on patients with break-through cancer pain. Since I don’t have cancer, they have recommended I try message therapy in place of this potent medicine that has brought me much relief. Another aspect of this medicine is it remains in the system a very short amount of time and causes minimal harm to my intestines.

My autonomic neuropathy has caused colonic immotility – paralysis of portions of my small and large intestines. (Diagnosed by swallowing a pill with 14 tiny rings that can be traced by x-rays as they move through your GI Tract. Mine had a get-together and decided to hang out for over 2 weeks before “leaving”.) This pain medicine dissolves in the mucosal lining of the gums giving pain relief in minutes and leaves the body in just a few hours. All other meds we have tried have either not provided pain relief or cause complete immotility. Having this pain medicine denied creates many complications. - It is not an option to pay out-of-pocket at $8,500/month - It takes time to withdraw from the medicine. (The last covered use date is June 17,2009) - We have to find something else to manage the pain that does not cause complete immotility.

We have had a consultation with a top GI specialist and he says that even these times of immotility could lead to requiring a complete colectomy. (entire removal of my small and large intestines) These are pretty important organs best I can tell. I am thinking of all that doesn’t happen when your stomach is simply attached to the “end” – hummm – I think several (maybe all) aspects of nutrition, absorption, and elimination take place within these organs. I do believe there is a reason that God put all those miles of tubing in there! Well, we thought we had a plan that would let us use some of the pain medicines we had to exclude in the past because of the GI immotility they caused. Drum roll please…….. A new injectable medicine has entered the market that helps reduce opioid-based constipation. I started on the med a few weeks ago with GIGANTIC results occurring within one hour. Then, after 2 weeks of success, the shot completely stopped working all at once. We changed batches of the med, double-checked everything we could think of but no results. Now, the plan to try some different pain medicines because of the insurance denial is in jeopardy. We truly have no answers at all.

Another complication also occurred. I have been experiencing complete immotility of my GI tract since failure of the shot. We are waiting on an appointment with the GI doc (on vacation) but this is not a good sign. It had been over 2 weeks since any “Clearance Specials” so he had his nurse call me and have me drink 265g Miralax stirred in 64 oz. liquid. (For general reference: a dose is considered 17g/8 oz. liquid once daily). Still, it took 10 hours for anything to move. The doctor’s Stimulus Plan was eventually successful. (I guess I qualified for a “bailout”) However, it muddied the prognosis of whether the shot that followed the next day was successful or if I was still under the influence of the laxative. It will be days before we will be able to tell. I don’t quickly add bulk to my system. I have been on a liquid diet for 3 months now so it takes some time. This cannot be a long-term plan because good and bad bacteria are lost in the “Stimulus Plan”. It’s only an emergency procedure.

We are also trying to manage my gastroparesis – paralysis of the stomach. This was diagnosed by eating “radioactive” oatmeal. I had to eat the large bowl of plain oatmeal and then lie on a table that tracked the oatmeal to my stomach and then measured how long it took to leave the stomach and start into the small intestine. After 6 hours the oatmeal was still just sitting in my stomach. It was supposed to be completely empty at this point. This test explains why when I have nausea and vomiting, I often expel food eaten 2-3 weeks earlier, only partially digested. We have been unsuccessfully trying to manage this and currently I have been on a liquid-only diet for 3 months. (except for a few doughnuts and some treats at Bible Study!!) If anybody has low-sugar smoothie recipes, please send a message and share!!

•             Please pray for favor with the insurance company. -Please pray for my immotility and the extreme abdominal bloating I experience.

•             Please pray for improvement in my gastroparesis

•             Please, Please pray for the GI medicine to begin working again - so much rests on its success!

•             Please pray for my doctor appointment on Wed. with my PCP (a great coordinator of my care)

Sorry for the long update. I let too much stack up while I was sick in bed the last week. I am getting out tonight to go to Community Group/Bible Study – my first day out of bed in 9 days! Yea!

I can’t close without saying what a blessing Steve has been these past 9 days I was in bed. He did the shopping, housecleaning, laundry, extra projects around the house and in the middle of these tasks, plus job demands, church responsibilities, and community commitments; he continued to care for me buy blessing my heart with a gift of a dozen beautiful roses for my nightstand. (Ladies, he even bought ones to match the décor of the room!!)

Thank you for all of your prayers – will update when we know more!

Blessings, Lee & Steve

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Messages

Michelle Grande May 12, 2009, 11:48 AM Lee and Steve, our hearts will remember you in prayer as you seek His will during this difficult time. Know that you are loved and missed! Tony,Michelle, Ashley and AJ

Rae Jean Bettmeng May 12, 2009, 12:07 PM Lee & Steve- As I sit here and read all that your body is going through my heart is overwhelmed with hurt for you both. Yet when I read what your heart is going through I see Jesus! You are an incredible testimony to your relationship with our Creator. I have seen you at some of your lowest moments and yet I see Jesus being steadfast in your life and see Him working in a great and mighty way. I miss you guys more than you will ever know! Thank you for giving us the honor of praying for you. Blessings, Rae Jean Bettmeng, Rapid City, SD

Sandy Moye May 12, 2009, 12:43 PM Thanks for keeping us up to date. You’re such an inspiration. Keeping you in my prayers. “I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.” Rom 8:18 Hugs, Sandy

Link Hudson May 12, 2009, 1:10 PM Our gracious God! How my heart hurts for Lee. As I sit here, I cannot even fathom this journey that she has been through. I pray so deeply for her healing, but more specifically I pray for these specific things she has asked us to bring before you. Jesus, we know Lee is highly favored in your sight! I ask that the insurance company she is dealing with would grant her a good measure of favor so the financial burden can be eased. Oh Lord, her body is fearfully and wonderfully made! What a testament to your creation that Lee has endured this suffering! But God, I ask for some comfort in her abdomen and intestines - that you would ease her pain by allowing her body to work as you designed it. Whether it is through medicine, or your direct intervention oh God, please grant her comfort! And Father, I pray for her physician. Please give him wisdom, and insight that questions may be answered and that he would have a supernatural understanding and guidance with his care of Lee. And God, selfishly I pray that I might be the type of caring and Godly husband that Steve is! Please help me to show my wife the love and care and devotion that this man shows Lee every second of every day! I pray all these thing in the name of my Savior, Jesus Christ! Amen!

Marissa Baldwin May 12, 2009, 1:13 PM Lee & Steve, I am overwhelmed at all the pain and suffering that you both experience, yet I see God working his magic through the words you write. God has placed two amazing people in my life that live hundreds of miles away! I will continue to pray for healing and relief from pain. Enjoy your roses! Marissa Baldwin Your mom’s community group at Corryton

Bethany Mincey May 12, 2009, 1:26 PM Lee and Steve, you may not know me but I feel like I know you. I attened WMBC and remember seeing you in your contraption after your brain surgery at Don’s hay ride. I did not know your story until several years later when I met your mother at CBC. (I sing in the choir with her…wonderful lady). She gave me a copy of your video and I have kept up with you ever since. I am so glad you are posting your information. Don’t ever feel like this is a “woe is me” site. I am amazed at your love for God and love for each other. Your life helps me keep my life in perspective. I will continue to pray and you keep sending the updates so I know what to pray for. Nice to “officially” meet you, Bethany

Bill Henry May 12, 2009, 2:24 PM Lee and Steve, Sandi and I are keeping you both in our prayers. We think of you often. I met a chief from Lacey (forgot his name)at the NFA a couple of weeks ago and he kind of filled me in. We love you guys. Bill (Henry)

Mark Brooks May 12, 2009, 2:25 PM Lee and Steve, I had no idea things had changed so much since the last time I heard an update. You are always in my prayers and I will definitely add these new requests to my conversations with our Father. You are a true encouragement to myself and others as we see everything your body is going through and yet your spirit continues to shine through. I love you both very much and if there is ever anything I can do please let me know, whether it be doing some research on this end or helping with updates, I’ll do whatever I can. Love, Mark

Betsy Ramsey May 12, 2009, 2:38 PM thanks so much for the update so that we will know how to pray specifically….you are such a gifted and colorful writer! Your faith inspires us all to keep on keepin’ on no matter what the circumstances. Know that the hands that fashioned the universe are strong enough to heal you and gentle enough to hold you. Has Steve started writing his book “How to be the best husband EVER”?

Nola von Neudegg May 12, 2009, 3:46 PM Hi Lee, Just letting you know I’m here and I care. Thanks for sharing from your heart. That’s what I appreciate so much about you. Hang in there! I will do whatever I can to make this situation better… I believe if we do everything we can, God will take care of the rest. You are in my prayers Girl! Nola

Cheryl Whitaker May 12, 2009, 4:09 PM Lee & Steve, Thank you for the update. I’m praying for you both. I wish I could do more. Please, let me know if I can help you with anything! With love, Cheryl Whitaker

Debby Swecker May 12, 2009, 5:46 PM Hi Lee and Steve, We will continue to pray. It all seems rather overwhelming. It is good that God does not get overwhelmed by any of our problems - he knows our needs before we do. We love you. Debby Swecker

Sandi Henry May 12, 2009, 6:16 PM Lee and Steve, thank you for sharing your update with us. Bless your heart, I don’t know how you keep your sense of humor! What a sweetheart Steve is. You are a great couple. I’ll pray for immediate relief of your GI problems and that the insurance company will see the light. We love you guys! sandi

Ashley Davis May 12, 2009, 8:17 PM Thanks so much for the update. I am so glad to know how to more specifically pray for you! I miss you and hope to get to see your shining face soon. Love, Ashley

Don Disney May 12, 2009, 11:20 PM I love you both and have been praying for you!

Ginger Thomas May 14, 2009, 12:37 PM Lee and Steve, I am amazed and humbled by your faith and strentgh. Thank you so much for letting us share this journey with you. You will remain in my prayers and thoughts. We love you guys. Ginger Thomas

tom hill May 15, 2009, 6:49 PM hey guys. long time. lets see what happens when thomas prays for you? dont get your hopes up. but ill think about you. tom 3

carol sparks May 16, 2009, 2:03 AM May God give you the wisdom and healing you need. You remain in my prayers. Carol Sparks

melanie bittle May 16, 2009, 2:36 AM Lee I pray for you and think of you often. God has used your strength and faith during your life’s journey to encourage me to keep fighting. I know that our paths crossed only for a short time, but I am forever greatful for the impact that your friendship has been on my life. I know that many miles separate us, but I would jump on a plane in a second to come hang out, help out or whatever you need. I mean that with all my heart. Thank you for the updates and I will pray, pray, pray for you. love you Melanie B

Dolores Burtnett May 16, 2009, 4:06 PM Hang in there sweetie. I wish there was something I could do. Anything at all let me know. I love you and you are both in my prayers. Dolores

Rae Jean Bettmeng May 16, 2009, 5:03 PM This is the day that the Lord has made… I will rejoice and be glad in it! I pray you find joy and laughter today! Love, Rae Jean